What A Life Of Health Complications Has Taught Me

I was born with cystic fibrosis, a genetic disease, and I spent my childhood in and out of hospitals trying to survive.

At 19, I was told I had 12 months to live because my lungs had deteriorated and essentially, they were going to fail me. My only option was to go on the transplant list and get a double lung transplant. The waiting list was up to two years, so I knew the call may never come but luckily, when I had about two weeks left to live, I got the call which saved my life - I became a transplant recipient.

There are downsides to a transplant though and while I lived my life the best I could until 2015, my body then decided to reject my new lungs. That means your body recognises the lungs aren’t yours and starts to fight them. My lungs have stopped rejecting for the moment, but it’s left me with only a 30% lung capacity amongst other issues, so now we work through each day as it comes.

We never really discussed my life expectancy in my family. We tried to maintain a positive outlook as I have been told “This is the beginning of the end” many times. When I was nine years old, I had been fighting staph. I was not in a good place at all and went on some trial drugs which just happened to work, so it kept me going for a few more years. When I was 11, in one day I coughed up a litre of blood and became the first in Australia to have an operation for that. It also worked and kept me going for a few more years.

You could say I have been the luckiest unlucky person in that regard!

My [transplant] operation took place in St Vincent’s Hospital which is where they do the double lung transplants. I was patient number 436 to receive a double lung transplant there.

For me it wasn’t difficult, I just had to lie down and wait, but for all the doctors, nurses, and coordinators behind the scenes there is a lot that goes on, especially if the lung has to come from interstate. There are other things, such as body sizing and surprisingly, it doesn’t matter if the organ is male or female.

Tania Murphy needs a bone marrow transplant to save her life.1:30

Tania Murphy needs a bone marrow transplant from someone aged 18-45, and with mixed Balkan/British Isles heritage, to save her life .

October 13th 2017

4 months ago

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I was in hospital around 10 days for recovery. You must learn to walk again and all sorts of other things. I had some setbacks and had to go back for emergencies because that just tends to happen. The first memory I had, where I really understood what happened was when I got home.

But about two months after transplant, I was sitting with some friends and I laughed. I could breathe in to laugh without having a coughing fit and feeling like I was suffocating, which was a lovely moment. For the next 12 months, I just kept on getting these little surprises.

The biggest challenges for me were more on a personal level. It was discovering who I was without an illness. I had no experience as to what that was like. I had to find out who I was in this new body and no one prepares you for that. The only emotional preparation you really have is around the operation itself.

Also, people don’t always understand that while a transplant is a wonderful treatment - it saved my life - it’s not a cure.

As I kept deteriorating, I thought I would start something I could create as a legacy. I found a gap in the system around the lack of emotional support, the non-physical symptoms of being a transplant recipient and I thought, “I want to make sure something is done for this”.

Lucky for me, my lungs have stopped rejecting(for now) but it’s left me with 30% lung capacity amongst other problems, so we are unsure what the future holds.

I was rejecting my lungs and I had just done a bunch of interviews for a documentary. As part of that, I discovered other transplant recipients were saying they hadn’t realised others were feeling the same lack of emotional support.

Things like depression, anxiety, guilt, PTSD, and body image issues. For the doco, I talked quite deeply about all of this and people opened up to me and I realised this was actually a thing.

I did more research and found over 90% of recipients experienced at least one of these things, and there wasn’t any support built into the recovery plan. You had to find it yourself. I had many friends pass away because they didn’t receive an organ in time, or they rejected an organ and they couldn’t be re-transplanted.

I had a beautiful friend who, in our last conversation, asked me what it was like to breathe. I really feel like everyone should have the opportunity to experience that so I started doing awareness talks while trying to increase the donation rate in Australia because we have one of the lowest donation rates in the world. Then a different friend called me from hospital and asked me to bring a toothbrush and some toothpaste.

I realised how simple things really make a difference and that gave me the idea for Gifted Life. In addition to the awareness talks, I’ve done four main things with Gifted Life so far. We create necessity bags and we’ve done at least 500 of those since we started in late 2015. They contain things like a toothbrush, toothpaste and all your toiletry needs plus a nice mug so you are not drinking out of plastic cups.

They also have a notebook and pen because you often want to write down things you need or just your thoughts on the day. We leave them at the hospital to be distributed by nursing staff.

We also create care bags containing useful, fun, and again often needed products for which there is a nomination system. People send us an email, telling us about a person and gives us their address then we send that off in the hope it motivates them to be kind to themselves. I find people are very hard on themselves when they are sick.

I also started making YouTube videos so people don’t feel isolated in their journey. I broach things people don’t feel comfortable talking about. It’s gotten such a big response that I’ve kept doing them.

It’s hard to explain but donor recipients can often struggle with the things that a healthy person can take for granted. Things like body image, social conversations, telling your boss you need a day off, even sex and relationships and how you deal with those things in recovery.

The response to the YouTube clips inspired my fourth activity, empowerment days for female recipients at a swanky hotel. We have a forum in the beginning and talk about all these important things. It’s a chance for female recipients to get together outside of hospital walls and really make strong connections. Makeup artists come in and give one-on-one tutorials to the girls, and advice on cosmetically covering physical side effects.

For example, one of the side effects is puffy cheeks when you are on high doses of a particular drug, so the girls learn tips that they wouldn’t necessarily get otherwise and tricks to help counter that aesthetically.

It’s just a really fun day and even though it seems fashion and makeup based, it is always so much more than that.

This story is one of many in 'Inspired Kindness'. Photo: SuppliedSource:Whimn

I don’t have statistics to back up what I do but, I do know we have created many donors, greatly increasing awareness. I know we’ve had an impact on an individual level because of the emails I receive on a weekly basis from people opening up, telling me their stories, their troubles about living with a chronic illness or just saying thank you.

Often, I get to refer those people to the help that they need. After an empowerment day recently, I had a girl tell me that it was the first time in two years she had forgotten about everything and just enjoyed herself. It makes it all worth it!

This is an edited extract from Inspired Kindness: 30 Stories Of Inspiring Leaders Doing Something Extraordinary To Change Our World by Emma Hogan. For every 200 copies sold, Hogan and her foundation Rainbow Jane will create a $10,000 grant to be issues to either start-up charities or start-up projects within established charities to help them get a new idea off the ground. Find out more here.